Tag: MS

So this is Christmas.

So this is Christmas….and how are you getting on?

There’s a train of thought that says the grief that follows the death of a spouse should be kept personal.  Which is a shorthand for the fact that a lot of people can’t or don’t want to deal with the feelings of the widowed (or bereaved, in general).  Or they don’t want to hear that it’s not a clean, upward curve of ‘getting over it’ but a messy splodge of scrabbling around, trying to make sense of what’s happened whilst, at the same time, trying to find some idea of what your future’s going to be.  But people keep asking.

The real meaning behind the question is like the real meaning of Christmas: it differs, depending on the individual.  They range from “I’m genuinely interested and I’m ready for whatever reaction you have” via “I care and hope you’re not doing badly but please don’t break down because I have no idea what to say or do” to the rictus-grinned “I’m only being polite. I’m really looking to reinforce my own feelings and skirt over yours. Don’t you fucking dare bring me down”.

After years of fielding questions about Trisha’s health deteriorating, you quickly learn to spot which is which.  Most people fall into the middle category, which I can understand.  There are some notable and very much appreciated exceptions who come into the first category.  The latter category is quite easy to deal with, barring the good actors who’ve had a bit of a shock but, frankly, they get what they deserve.

So, how am I getting on?  Shit, really.  I keep searching for ways to cope – reading books and watching films about bereaved spouses to see if there are any clues I can glean.  Some are helpful, others offer an excuse for a good weep and a wallow (Mum’s List – Rafe Spall is very, very good).  I know, I know – I don’t need an excuse beyond what’s happened.  The films provide cover.

I’m not feeling festive.  Trisha left 9 weeks ago on Christmas Day.  She absolutely loved Christmas but it feels empty without her.  I’m sure anyone who is experiencing or has experienced the first Christmas after bereavement has a similar feeling, even if it varies in intensity.  I’ve put a few decorations up but it’s been a real effort.  And if I hear Mud’s “Lonely This Christmas” one more time, I am going to let it all out and everyone will just have to cope with it.

I’m tired of the fake smile.  I’m tired of trying to keep up in the jollity stakes.  Being surrounded by TV and other media images of happy couples and smiling families is particularly hard when mine is shattered.  Despite having my mother with me for the past couple of months, I still feel very, very lonely.  It’s not easy continually holding back tears.  Which probably explains the sleeplessness, panic attacks and periodic meltdowns.  Luckily, they’ve only happened at home.

This is not to say that it’s all darkness and shite.  I caught myself thinking about what kind of home I want to live in.  I don’t mean the bricks and mortar, but what I’d put inside.  What I’d put in differently from the furniture I have now.  What kind of environment I’d be happy to call home.  These are the first little bits of future-thought creeping into my head.  Despite them being tiny chinks of bright in comparison with what I’ve written about Christmas, they’re a start.  I’ll take that.

So this is Christmas, and this is how I’m getting on.  Let’s hope the New Year’s easier.  Than the one that’s just gone.

So, I’m standing in Clinton’s, looking at all the cards with “To my special wife” and “To the one I love…”, while “All I Want For Christmas Is You” is playing.

I was *this* close to full meltdown.  I got away with a crack in my voice at the till.

Good grief

This is the first post after losing Trisha.  Seeing those words still causes that now-familiar sting in the eyes and knot in my stomach.  Three weeks on, I still don’t know whether and how much I should tell people.  Do I get my disclosure in first, just ‘out with it’? Or should I keep quiet and wait for people to ask why I’ve a face like The World’s Most Slapped Arse Ever™?  Do I wear my grief on my sleeve or not?

Is there such a thing as ‘good’ grief?  I mean, is there a ‘proper’ way to grieve?  I have no idea.  Logic tells me there is no proper way to grieve, only a personal way that’s peculiar to each individual going through the process.  (Is it just me or does ‘process’ seem like a very unseemly word to describe the sequence of emotions and experiences felt by the bereaved?  It’s something that’s too human to have such a logic-driven, robotic word attached to it.  Just thinking aloud.)  So, why am I thrashing about, trying to figure it all out?

I’ve started to search out all things grief-related.  Books, films, TV programmes, newspaper articles, websites, people on social media in similar circumstances….right now, I’d take runes and tea-leaf readings if I felt they’d help me find my way (I don’t, but as I get more desperate, watch this space).  I’ve become a grief addict.  Hell, I’m even watching Sleepless in Seattle as I write this.  I daresay I’m looking for answers.  The only answer I have for any aspect of life right now is “I don’t know”.

I don’t know where I want to live – as we live (live…lived, whatever…) in a rented bungalow specially adapted for people with disabilities; I can’t stay here, someone who’s been on a waiting list for goodness knows how long will need it.  I don’t know about Christmas, I don’t know what I want to do in life, I don’t even know who I am (I’m the Bourne Widower!).  For sixteen years, I was part of a whole.  Now, I’m a part that’s adrift.

I don’t have any answers.  I don’t even know what the right questions are.

It’s been four weeks since you had any food, yet I’m absolutely astonished by your resilience.  I don’t know how you still have the strength to open your eyes.

I can’t help but assume that this is going to be a long, drawn-out decline.  And I’m undecided whether this is a blessing or a curse.  I can’t let you go but I hate seeing you suffer.  We’re on your time now, sweetheart.  I’ll take as much time as you want to give me.

How can you smile when I talk to you?  I mean, I’m glad you do: it’s a sign that you’re comfortable, not in pain or distress.  Despite what’s happening to you, your body failing you, you can still manage to move your lips into a slight smile.  You’re not even fully conscious, yet you seem to understand what’s going on around you enough to react with a smile.  At least, I like to think it’s a smile.

I smile.  I smile at you, obviously. Only, mine is a weak smile.  Not the full lights-up-your-face smile that you’ve always had.  That you’re known for by everybody.

These days are a kind of limbo.  Is it an adjustment period?  Are you being this calm so we have time to process and prepare for what’s coming?  That might prompt questions of spirituality.  A spirituality I don’t have.

All my rationality tells me is that you’re comfortable, not in pain and not distressed.  That this bastard of a disease that’s robbed you of absolutely everything is giving you an easier time at the end.  It owes you that much.

Her name is…

For the last 6 years, I’ve only referred to my wife here as MW. My cack-handed way of trying to offer her some kind of protection. Safety in anonymity, that sort of thing.  Given the prognosis, I don’t think it’s fair to continue referring to her as MW. She deserves to be called by her name.

Her name is Trisha.  We met in York and we’ve been together for nearly 16 years. First, we saw each other on the sly, she was married.  Her relationship was violent but she said she felt stuck in it.  Once she’d made sure I meant what I said when I told her I wanted to be with her (it took a lot of telling but it was worth it), she left her husband (no small feat but it didn’t end up being the morass we’d both feared – it could have gone horribly badly) and we found a little flat above a hairdressers that was our home until about a year after she was diagnosed and she could no longer manage the stairs.

A couple of years before Trisha was diagnosed, we went on holiday.  A two-week Caribbean cruise that took in some of the areas that have been hit recently by Hurricanes Irma, José and Maria.  I remember Antigua most of all.  We’d been on a sightseeing tour of the island and we’d been taken to a market area afterwards. A stall was selling the brightest sun dresses and Trisha had her eye on a couple of them – one white, one yellow.  For some reason, I had all our cash on me (insert something about the patriarchy here).  Trisha wanted to buy these dresses and was explaining to the stall owner that her boyfriend was away taking photos of something or other.

I was enjoying looking out to sea and just generally feeling relaxed and content when I heard the stall owner shouting.  She was pretty bloody loud, but she wasn’t shouting in anger and I wasn’t expecting her to be shouting me, so I didn’t pay much attention.

“Simon! SIMON! SIMON, WHERE ARE YOU? TRISH NEEDS YOU!!”

Embarrassed (mostly because the owner probably thought I was some kind of control freak), I ran over and gave Trisha the wad of cash, apologising profusely.  She bought them both and still has them.  Even now, we smile together as we remember that holiday and the woman shouting, “TRISH NEEDS YOU!!”.  Funny how some words stick in your mind, and how they gain meaning as time goes on.

Futility

“Medically futile”.  I’ve never heard two words that have cut through me more than those.  No matter how warmly they are delivered, they are the coldest of words to use in connection with a human being.  Particularly one you love.  I’ve heard them twice recently, in the same meeting.  Both instances regarding the use of artificial means of providing food or other nutrition to MW.

She will not be given a PEG tube – it would be “medically futile”, i.e., it won’t make any difference to the final outcome. Now she won’t be given a nasogastric tube for feeding, either.  Bizarrely, she’s already had one which she took to rather well but, for some reason, it came out.  They won’t put one back in.  It, too, would be “medically futile”.  She’s not taking food or fluid orally, she’s lost the ability to swallow.  And it all frustrates the hell out of me.

I used to be a civil servant.  We had an abbreviation that we applied to a case that cost more to work than its maximum forecasted result: NWFP – Not Worth Further Pursuit.  It feels like this has been written on MW’s file.  That she’s no longer worth the effort.  Rationally, looking at it with cold logic, I get it.  Emotionally, it can fuck off: she is infinitely more than an effort/benefit ratio.

People keep asking me how I am – the medics in that meeting, family, friends, neighbours.  They already know how I am.  Or can guess.  How am I?  I’m hurt.  Angry.  Frustrated.  Sad.  Empty.  Numb.  I am in mourning.  For an event that hasn’t happened yet but is going to.  Pre-grief grief.  A few days ago, half undressed and ready for the shower, I had a meltdown.  A full-on, hands and knees, snot and sobbing meltdown.  “I just want her back”.  Repeatedly.

Twelve years ago, just before MW was diagnosed, we were waiting for the results of her MRI scan.  Her vision was compromised and she was struggling to walk.  The options on the table regarding possible diagnosis were MS and a brain tumour.  I remember vividly the words of a colleague – an MS sufferer.  “If it’s MS, it’s not a death sentence.”  I know she was trying to reassure me that her experiences with MS proved that the disease wasn’t so much of a curb on her life.  That the alternative option was worse.  I know that she couldn’t know what was going to happen.  Maybe one day I can accept what she said at face value, but today is not that day.  Today, I’m bitter and resentful.  Today, to save MW, I could murder the world.

At times, I’ve wondered if me being frustrated while caring meant that I was cold.  No.  I was just stopping myself from feeling what I feel now.  Utterly helpless and desperate for things to go back to how they were.  Before, the frustration could be tamped down by doing something practical, to enable us to go on.  Now I can’t do that.  There is no going on.  There is no practical thing I can do to make things easier.  I can only watch, stupid and helpless, while this disease slowly and sadistically steals everything that’s left of MW.  I just want her back.